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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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@fredes you’ll find that you will have some fluctuation in all probability. My hematologist/oncologist tells me not to worry as he will not unless there is a big jump that warrants further investigation.
One of our most productive discussions was when I asked him to tell me what constitutes lab results that would cause concern. I recommend that you have that same discussion. I worried so much more for the first year or so after I was diagnosed. My lab results have remained relatively stable.
Have you had the opportunity to get your questions answered?
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1 Reaction@quaglietta13
It amazes me that the medical community isn't aware of these side effects! I'm weaning myself off. Thanks for the response.
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1 Reaction@wheegie
I was prescribed gabapentin for joint pain.
What a horrible experience. I was wasted, fatigued and slept horribly.
I stopped after 3 days. Same story Doctor did not make me aware of any side effects.
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1 ReactionSome links about MGUS:
https://www.healthline.com/health/how-serious-is-mgus
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
https://my.clevelandclinic.org/health/diagnostics/22369-kappa-free-light-chain-test
https://www.ccjm.org/content/86/1/39
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3 ReactionsYes, a couple years ago I was tested after complaining about neuropathy pain in my feet after a second liver transplant. Apparently this test was run on me years ago when I was first being tested for my 1st liver transplant in 2000. There are a couple other things related to this diagnosis related to light cells. Ask you doctor about that. I now have a regular annual test starting up with a PA in the blood related diseases.
@1oldsoul
That's exactly how I feel! I'm also dizzy and in a brain fog when I wake up in the mornings. When I take my first dose in the morning after about 1 hr, I'm sound asleep again. I'm slowly weaning myself off of it because honestly I can't think straight. I was prescribed 3 doses per day and I'm now down to 2. I plan to drop down to only 1 dose in the next few days. I've been warned not to stop taking cold turkey. I've been taking it for about 6 months.
Thank you for the response.
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2 Reactions@1oldsoul
I was given gabapentin when I had a herniated disc and had no side effects, so maybe people respond differently. I think I took for a month or so.
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2 Reactions@wheegie
It is so incredible that doctors are not aware of common side effects. Gabapentin is prescribed off label for sleep-I know because it was prescribed for my insomnia and it did help me sleep at night. It just made me so spaced out and a little dizzy all the next morning that I had to discontinue it. I was on it for a month or more and those side effects never got better. I’m not surprised you felt extremely fatigued after taking a dose.
Yea I was diagnosed A few years ago . And had mastectomy 7/23 . was told a few minutes ago I have an Mspike.
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1 ReactionI've been diagnosed with MGUS and also taking gabapentin. I'm finding I have extreme fatigue after about an hour of a dose. Would you please explain to me what your side effects were? I told my PCP that I thought it was the gaba that was causing my sleepiness and he said he had never heard of that. Thanks!